The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia.

Baker, EK; Arora, S; Amor, DJ; Date, P; Cross, M; O'Brien, J; Simons, C; Rogers, C; Goodall, S; Slee, J; Cahir, C; Godler, DE

The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia.

Baker, EK Arora, S

Amor, DJ Date, P Cross, M O'Brien, J Simons, C Rogers, C Goodall, S

Slee, J Cahir, C Godler, DE

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Publisher:: SPRINGER/PLENUM PUBLISHERS
Publication Type:: Journal Article
Citation:: J Autism Dev Disord, 2021
Issue Date:: 2021-07-22

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Field	Value	Language
dc.contributor.author	Baker, EK
dc.contributor.author	Arora, S https://orcid.org/0000-0002-7562-2416
dc.contributor.author	Amor, DJ
dc.contributor.author	Date, P
dc.contributor.author	Cross, M
dc.contributor.author	O'Brien, J
dc.contributor.author	Simons, C
dc.contributor.author	Rogers, C
dc.contributor.author	Goodall, S https://orcid.org/0000-0001-6611-6565
dc.contributor.author	Slee, J
dc.contributor.author	Cahir, C
dc.contributor.author	Godler, DE
dc.date.accessioned	2022-01-17T04:07:12Z
dc.date.available	2021-07-08
dc.date.available	2022-01-17T04:07:12Z
dc.date.issued	2021-07-22
dc.identifier.citation	J Autism Dev Disord, 2021
dc.identifier.issn	0162-3257
dc.identifier.issn	1573-3432
dc.identifier.uri	http://hdl.handle.net/10453/153212
dc.description.abstract	The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt Inventory and participants completed intellectual/developmental functioning and autism assessments. AS incurred the highest yearly costs per individual ($AUD96,994), while FXS had the lowest costs ($AUD33,221). Intellectual functioning negatively predicted total costs, after controlling for diagnosis. The effect of intellectual functioning on total costs for those with AS was significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SPRINGER/PLENUM PUBLISHERS
dc.relation.ispartof	J Autism Dev Disord
dc.relation.isbasedon	10.1007/s10803-021-05193-4
dc.rights	This is a post-peer-review, pre-copyedit version of an article published in Baker, E.K., Arora, S., Amor, D.J. et al. The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia. J Autism Dev Disord (2021). . The final authenticated version is available online at: https://doi.org/10.1007/s10803-021-05193-4
dc.rights	info:eu-repo/semantics/embargoedAccess
dc.subject	13 Education, 17 Psychology and Cognitive Sciences
dc.subject.classification	Developmental & Child Psychology
dc.title	The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia.
dc.type	Journal Article
utslib.location.activity	United States
utslib.for	13 Education
utslib.for	17 Psychology and Cognitive Sciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHERE - Centre for Health Economics Research and Evaluation
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Centre for Health Economics Research and Evaluation
utslib.copyright.status	open_access	*
utslib.copyright.embargo	2022-07-22T00:00:00+1000Z
dc.date.updated	2022-01-17T04:07:11Z
pubs.publication-status	Published online

Abstract:

The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt Inventory and participants completed intellectual/developmental functioning and autism assessments. AS incurred the highest yearly costs per individual ($AUD96,994), while FXS had the lowest costs ($AUD33,221). Intellectual functioning negatively predicted total costs, after controlling for diagnosis. The effect of intellectual functioning on total costs for those with AS was significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/153212